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Sunday, 30 August 2015

Part of coping with ME, I think, is about drawing circles around the things we aim to influence.

When I was well, I once attended a staff development session where we were asked to list all the things in the world we'd like to change.

Then we were then told to place each thing either: inside our "Circle of Realistic Influence" or outside of it. The take-away message was that we were to forgive ourselves for not tackling those things outside of our personal circles.

Now that I think back on this session, it makes me realise just how much ME sufferers must draw tight circles around their lives - often pushing more and more things outside of that circle of influence.

In fact even looking at what we can cope with on a daily or weekly basis, shows how we need to "Let Go!" of some things that, before illness, we took totally for granted.

I expanded the concept of having a single circle and did this one for me and my ME.

The innermost circle shows the things that are basic essentials for life, and in truth probably represent the sum total that the very severely affected can manage.

The next two rings are more personal, and could change over time depending on current circumstances. The "Less than Daily" circle looks a good list, but doing one thing on the list, is likely to mean that others must be abandoned. So some items will be very infrequent. I created the graphic a few weeks ago - I might make some changes were I to re-do it today.

Finally, I thought long and hard about what to call the outer circle. I didn't want to call it "Beyond My Ability" - even though that is really what the stuff there represents. So I thought "Aspirations" would be much better.

I think perhaps for some-one newly ill with ME an exercise like this might help them to let go of certain things without guilt. I remember early in my illness deciding that I had to totally let go of what happened to my garden. I could no longer tend it myself, nor could I ask family to keep it up they way I wanted. So I let it go.

One day perhaps I will be well enough to spread all my circles out again, so that my garden once more is tended as I would wish.

Saturday, 8 August 2015

Today is Severe ME remembrance day when we think of those too ill to leave their darkened, and eerily quietened, rooms.

Today once more, patients, families, carers and friends will try to alert the world and the medical establishment to the travesty of the "living dead" - those who are most severely ill and largely forgotten.

Last year I wrote a blog post called "Living Death Disease" to try to highlight this incredibly mis-represented and misunderstood situation.

A quick look on social media today under the tag#SevereME will bring up scores of blogs, videos, tweets, links, and messages. (Please look, like and share as much as you feel able.)

Yet advocates have been campaigning for change for decades. The history of how some ME patients have been treated by the establishment makes for harrowing reading.

"In 1992, the Wessely School gave directions that in ME/CFS, the first duty of the doctor is to avoid
legitimisation of symptoms; in 1994, ME was described as merely “a belief”; in 1996 recommendations were
made that no investigations should be performed to confirm the diagnosis and in 1999 patients with
ME/CFS were referred to as “the undeserving sick”. "

So how can we do ENOUGH to tip the balance in our direction?

What do we need to do, so that the rest of the world will look on in horror and shout "ENOUGH!" on our behalf?

How can we persuade ordinary doctors, who receive inadequate training on how to cope with ME, to champion our cause?

I don't have ready answers.

Physically, I may not be up for placard waving or protest marching but I can blog, I can use social media, and I can work with others to push for change in my own area.

Please join me and others, in highlighting this situation - because surely, by now, we've all HAD ENOUGH!!

It's time for change!Severe ME must be validated as the devastating physiological illness that it is. Substantial research funding must be secured to investigate its etiology, and the psychiatric premise for ME treatment must be fully discredited and discarded.

What the medical authorities currently regard as enough, is simply NOT enough!

*****

PS Yesterday a fellow blogger asked me if I was going to publish something today. I replied that I was in a bit of a dip, and wasn't sure that I would. Yet last night when I read what he had written, I knew I had to say something!